CF Progresion

[LisaV]

well, let me put that another way.

Maybe it is time for us to take a time out and sit quietly and experience the emotions that this thread has raised for each of us. See if we can learn something about what we're feeling and why we're feeling that.

I know that I'm feeling frustrated with and sad about family members who seem to emphasize denial over acceptance -- even to the point of hurting their CFers -- and need to work on that. (Also don't want anyone else to ever stumble into that without warning.) But no doubt there's some other stuff that I have to discover about what's been pushing my buttons and why.

And, of course, you have your own perspective.....

 

[anonymous]

I'll try not to, but it is difficult some times I must admit. Bluntness does upset me though, perhaps cos it's early days and I'll get tougher (hopefully) as time goes on. I don't know.

Charlotte<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[anonymous]

PS I have always accepted that my daughter has CF from the day that I found out even though I found it very hard to believe and still do. I still feel that it scares the hell out of me but am trying very hard not to, but hey who wouldn't if they were completely honest? I know deep in my heart that I do all I need to do to look after my daughter and keep on top of her physio, treatments, etc. That's all I can do right?

Charlotte<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[Tess]

Charlotte, <img src="i/expressions/face-icon-small-smile.gif" border="0">

I am 23. I have CF. But, you know, I too am a Mom..... Yep we can have beautiful kids ourselves. My daughter is two and healthy .... she was tested at 6 months old, to which she was given a clean bill of health. And I thank my lucky stars EVERYDAY that she is. I don't think I could handle giving my kid meds all the time, physio, and all that was done for me by my parents, though I am thankful they did it.

I worry about my daughter constantly everyday too "yep I too worry about my two year old" It's a parent thing only men don't show it as much because their "tough guys".

All I can say is raise her a normal as you can, being that she is a kid and need the intellectual stimulation, physical activity, emotional development etc. that any other child should have, just work meds and treatment into her day from the start and she'll accept it as 'that's how it should be', then when she's older and she will get older, involve her in her treatment dr. visits and things like that. There was always a time during the visit when we <my brother and I are both CFer's> were asked to leave the room and I always wondered what my parents and Dr.'s were talking about, never had the chance to ask mom or dad cause we were kept in hospital and they went home.......... so I still wonder, being that they wouldn't remember now.

I really wasn't trying to sound 'sarcastic' at all though I think it does a little, it is really not.... just heart felt.


Charlotte your asking old CFer's and sometime we don't really remember much because we had to grow up a bit faster then normal and because of our over protecting parents were sheltered from things we would have greatly enjoyed doing. So from a resentful Cfer, let your little CFer be a kid first and a CFer second.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Tess</b></i>

Charlotte, <img src="">



I am 23. I have CF. But, you know, I too am a Mom..... Yep we can have beautiful kids ourselves. My daughter is two and healthy .... she was tested at 6 months old, to which she was given a clean bill of health. And I thank my lucky stars EVERYDAY that she is. I don't think I could handle giving my kid meds all the time, physio, and all that was done for me by my parents, though I am thankful they did it.



I worry about my daughter constantly everyday too "yep I too worry about my two year old" It's a parent thing only men don't show it as much because their "tough guys".



All I can say is raise her a normal as you can, being that she is a kid and need the intellectual stimulation, physical activity, emotional development etc. that any other child should have, just work meds and treatment into her day from the start and she'll accept it as 'that's how it should be', then when she's older and she will get older, involve her in her treatment dr. visits and things like that. There was always a time during the visit when we <my brother and I are both CFer's> were asked to leave the room and I always wondered what my parents and Dr.'s were talking about, never had the chance to ask mom or dad cause we were kept in hospital and they went home.......... so I still wonder, being that they wouldn't remember now.



I really wasn't trying to sound 'sarcastic' at all though I think it does a little, it is really not.... just heart felt.





Charlotte your asking old CFer's and sometime we don't really remember much because we had to grow up a bit faster then normal and because of our over protecting parents were sheltered from things we would have greatly enjoyed doing. So from a resentful Cfer, let your little CFer be a kid first and a CFer second.</end quote></div>


I treat her exactly the same as her older sister (w/o CF). I am definitely not over-protective.

Charlotte<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

And I have always involved her in her Drs visits, etc, how couldn't I? (don't mean to be sarcastic)

Charlotte<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

And I have always involved her in her Drs visits, etc, how couldn't I? (don't mean to be sarcastic)



Charlotte<img src=""></end quote></div>



Many parents dont involve the kids thinking its what is best for their kids at the time. I realize each child (CF or otherwise) is different so it would vary.

 

[anonymous]

gosh! why is everyone so snappy?. never seen this before.<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[melleemac]

Im a mother of identicle twin 11 year old boys with cf. When they were diagnosed my whole world fell apart. Mind you they were really sick and in hospital for five months after diagnoses, not responding to medications etc. We didnt know if they were going to make it even back then, having sverel respitory arrests and one had a cardiac arrest. When the were two they ended up on kidney dyalasis. At the age of six less than half of their lung function. Every time we arise over one problem, something else seems to go wrong, ie diagnosed as hydrocortisone dependant, diagnosed with aspregillous (spelling) in their lungs and then an allergy to it. If its not one thing it is another. So, yes there is not a day that goes by that I dont worry about my boys. I do however try to let them have as normal of a childhood as possible, I dont put them in a bubble. They still go camping, they go to sleep overs and play sports etc. The one thing that really frustrates me is alot of people tend to say that just because a child was diagnosed more recently they will live a longer life. Nobody knows that, yes the median age has risen a great deal, which is fantastic! My boys are already on the best medication, and there is still talk of lung transplants already, in the future. They are only 11! I love my boys more than life it self and will do anything to keep them healthy, but for us no matter what we do it is never enough.
My boys love life, we take one day at a time and make the most of every minute as a family. All of us as a family fight this horrible disease and we will never give up the fight, its jsut so darn frustrating!
Mel

 

[anonymous]

You've knocked the nail on the head there - frustrating! Sure it is, but as you say you are doing you all you can to keep your boys healthy, so surely you are doing all you can do. Like you say, just take one day at a time, like we are trying to do.

Take care.

Charlotte<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Ratatosk]

When DS was diagnosed, I did a lot of research online, so I knew "what to expect" in terms of progression of illness. I was heartbroken when I looked up DS's mutation -- homozygous delta f508 and read that it was the most severe form of cf -- I'd post on other sites, desperate for answers. And when I asked the doctor about "mild" cf, I was heartbroken again to hear that there was no such thing. It seemed harsh at the time, but it was something we needed to hear at the time.

We were in denial -- DH and I remarked that at least if the test results were wrong -- DS had a normal sweat test and his two genetic blood tests orginally came back as inconclusive 'cuz they didn't obtain a large enough sample -- then at least in the meantime he was getting excellent lung care with the 3-4 cpt treatments and nebs and different meds he was getting each day.

Thing is with cf, is that everyone is different. Parents can have children with the same mutation, yet all with varying degrees of severity, varying symptoms... A lot depends upon when the person was diagnosed, what bugs they're growing, types of medical care they receive -- if I call the local clinic with a concern about DS's health when something is out of the ordinary, I'm told not to worry about it -- that all cfers cough. My son's regular CF clinic in the city is a little more agressive --- if his cough sounds kinda junky, productive -- out of the norm for him, then maybe he needs to be put on some meds, increase cpt....

We just do what we can to keep ds happy and healty. Lead a normal life -- be in activities, play outside, make friends... Liza

 

[Faust]

Yup everyone is indeed different. Someone who is in denial and thinks they have "mild CF" and doesn't take care of themselves, can indeed outlive (and sometimes by quite a large margin) those who are seemingly worse off but are in compliance with their care. I take good care of myself in the scheme of aresols, staying out of smokey places, supplements, and exercise and occasional vest and good outlook. I'm 35 and last check had 99% lung function. I find if I start to get a little chunky or whatever (rare, but it does happen), I alter my OO doseage and hit up my vest more to stay clear, then i'm ok and can almost always avoid the hospital.


Of course for some reasons (mutations, being breastfed for a long time, whatever) I'm generally a rare case. Of course I know I will die with Cf also, as long as I don't get hit by a bus or something accidental. But i'm ok with that. I have had a great life and a great family and wonderful friends and great experiences.

 

[Faust]

BTW Rasta, I always wondered why you refer to your child as "DS"...?


Wouldn't just a first name be better?

 

[littledebbie]

Charlotte, just to let you know for the future I think it does make a differnce where you post these questions. <br><br>
For me personally when I am reading through the Family section I keep it stongly in mind that there are a lot of parents there new to CF and I should try to keep my comments as "comfortable" as possible and that if I can't find a somewhat tactful way to express my opinion I try to resist comment.<br><br> However, I'm not so mindful in the adult section and figure if you ask an honest question here you are going to get an honest answer...by everyones standards. So uhmmm as poilitely as I can say this, here it is...if you can't stand the heat - get out of the kitchen.

 

[Ratatosk]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SeanDavis</b></i>

BTW Rasta, I always wondered why you refer to your child as "DS"...?





Wouldn't just a first name be better?</end quote></div>

I have changed his name to protect his innocence. Okay, I didn't, just so used to using DS on this site prior to joining, deciding on whether or not to join -- besides -- his full name is.... drum roll please -- Maximilian! You try typing that several times. Okay, we call him Max. there, I've said it. I've come out of closet.

liza

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Charlotte, there's a great chance you're child will live a good, full life. You asked about progression, not death, and as you've heard, it is different for each person. But you're right: It is also likely to be different for a person born in 2003 than for one born years ago. You have every reason to be optimistic, just as you have reason to be concerned. Don't let the "bluntness" discourage you.</end quote></div>
Progress (www.dictionary.com):
1. Movement, as toward a goal; advance.
2. Development or growth:

Death may not be the goal we have in mind, but it's still a goal, it's still growth and development. Sorry, but to me, progression <i>includes</i> death. So if you ask about it, you're going to hear ALL of it.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>littledebbie</b></i>
So uhmmm as poilitely as I can say this, here it is...if you can't stand the heat - get out of the kitchen.</end quote></div>
Agreed.

 

[Allie]

I agree, on the adults forum, you're going to get more straightforward, honest answers. If you can't take it, move to the kiddie pool. Death is a part of CF. Until I am proven wrong on a regular basis, I stick by that.

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>luke</b></i>
An example..lets say you have a friend that is overweight and unattractive. Now you know she's fat and ugly and she knows she's fat and ugly. Let's throw into the mix that no one asked her to the prom and she is upset about it. Do you console her by reminding her that if she wasn't so fat and ugly she might have got a date? Anyway....not apples to apples I know but I think you get my meaning. Sometimes people know the truth..it just dosen't help anyone to say it say it out loud.
Luke</end quote></div>
There's a difference between scientific medical fact... and opinion. CF is medical and has evidence, fact, and cases to back up various statements. Beauty is a matter of opinion. What you may find fat and ugly, I may find incredibly sexy.

<div class="FTQUOTE"><begin quote>And yes, at times we all need a little sugar coating of the realities of the real world.</end quote></div>
And speak for yourself, please. I'd rather not be handed any sugarcoating. Especially about my health.

 

[thelizardqueen]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

<div class="FTQUOTE"><begin quote>And yes, at times we all need a little sugar coating of the realities of the real world.</end quote></div>

And speak for yourself, please. I'd rather not be handed any sugarcoating. Especially about my health.</end quote></div>

Sugar coating things gives you unrealistic hope. I don't want unrealistic hope. I want facts. Fact is, at this very moment CF progresses to an early death. Death is a part of progression. Sure 40 is old for a CFer, but fact is that is still early in an average, "normal", healthy lifespan. Healthy people live to be 60-100. CFers for the vast majority do not.

 

[luke]

I think it ironic that that several have commented Charlotte shouldn't post questions in the adult section when many of your responses reflect the manners of a chilld. I guess I missed the rule where people were allowed to be thoughtless and rude in the adult section but not in the family section. I find it embarrassing that a forum created for support can be so rude to a mother trying to understand and cope with CF in her child. With that being said...if the intent is to attack me because Allie was thoughtless and I called her on it that is fine. I just suggest you find a better point to do it on and leave frightened mothers looking for support out of it.



luke